Twice The Caregiver – Kathleen’s Story

When did your introduction to pancreas disease start?

In looking back on my experiences, my absolute first memory of being introduced to pancreatic disease was in 2011 when working in an Emergency Department of a Level 1 Trauma Center. An elderly female patient came in to be evaluated for abdominal pain; her daughter accompanied her. I was a medical scribe at the time, and noted mild jaundice on physical exam. The yellowing of the patient’s skin and sclerae were difficult to visualize under the fluorescent lighting, but it was there. I still remember seeing the pancreatic mass on her CT scan when it resulted, but I didn’t grasp its profound impact on the patient’s life. I remember this specific encounter so well because I was present for the discussion the emergency physician had with the patient. His reverence and sorrow in explaining why he was referring her to Surgical Oncology was humane and humbling. The private discussion the physician and I had afterward, to explain to me the significance of this disease and the importance of a rapid referral, stuck with me. I remember calling my Mom after my shift had ended, as I’d done so many times before and after, to tell her what I had learned; never knowing that moment raised an awareness in me that would also impact my future life, and hers.

A couple years after this initial encounter with pancreatic disease, I’d begun working in Surgical Oncology research at a National Cancer Institute (NCI)-designated Comprehensive Cancer Center. I was invited to attend a gastrointestinal oncology symposium to learn more about the diseases I would be hearing about and studying. Pancreatic cancer was a keystone subject, and I paid attention. The same reverence and sorrow hung in the atmosphere just like before; it was so quiet. It almost seemed a taboo subject due to the lack of advancements in research – no screening tools, unchanged or non-effectual chemotherapy, and minimal funding opportunities – overall little headway. At the time the National five-year survival rate was 6%, with the projection that the incidence would increase and surpass other major cancers in the United States in the near future; and with those all being more well-known in comparison: lung, colon, breast, as examples.

Within two months of this conference, I messaged the Hepatopancreatobiliary (HPB) Surgical Oncologists I worked with requesting advice as I believed my Mom, who had just turned 60, had “early stage pancreatic cancer”.

What was your process in accepting her diagnosis? Did you do a lot of research in her diagnosis?

I knew the signs and symptoms of pancreatic disease due to the conference I had attended that year.  I believed my Mom was in real danger of having pancreatic cancer. In my mind it was the most logical explanation of her symptoms so I accepted it as a true possibility. I soaked up everything I could Google about pancreatic diseases. And I tried to measure my words, and temper my fears, when speaking with my parents so as not to scare them. However I was honest and open in what I felt and believed to be true: I wanted them to be prepared in the event of ‘bad news’ and feel empowered enough to fight, especially when the general consensus seemed to be that of defeat or futility.

My Mom’s diagnosis wasn’t straightforward – it took time. After a few months of non-diagnostic EUS-FNAs, hospitalizations for subsequent episodes of associated pancreatitis, and then a pylorus-preserving Whipple in 2014, my Mom had a definitive diagnosis: Stage IA pancreatic cancer arising from a 2cm intraductal papillary mucinous neoplasm (IPMN) of the main pancreatic duct. There was little data available for early-stage pancreatic cancer, especially when the cancer was arising from a precancerous lesion; but adjuvant chemotherapy was recommended by a multidisciplinary team of HPB specialists at our local Comprehensive Cancer Center, and we agreed. We felt something, anything, would be better than watching and waiting. Mom underwent five of six planned cycles of gemcitabine (Gemzar), but chemotherapy was difficult. And yet my Dad and I were with her for every appointment, each treatment, every emergency room visit and hospitalization. In spite of it all, my Mom remained positive, happy and resilient: she never gave up hope. Afterwards, surveillance felt strange to us – at least at first. The intense worry with each appointment and scan slowly faded as life returned to normal. We found such joy in the months, and years, that followed; we knew how blessed we were in catching it early and how thankful were we for the compassionate team of specialists at Wake Forest Baptist.

When your Mom was diagnosed with pancreatic cancer, how did you help with being her caregiver/supporter?

In the immediate postoperative period, my Dad and I traded shifts at the hospital. We would watch over her and advocate for her. In the mornings before work, I’d help her get ready and prepare for the day; and at night I would tuck her into bed and just visit until the next new day. Sometimes I would stop by her room on my lunch break and we’d all walk through the unit together. When she was discharged home I visited my parent’s home each day to change her abdominal wound dressings and give her prophylactic blood thinner injections. Every day, three times a day, for six weeks I visited (my apt was 20 minutes away via interstate).  Mom recovered quickly, and soon didn’t need daily assistance from Dad or me.

Afterward, I accompanied my parents to every single appointment; whatever it was I was there. We would talk as a family about what had been discussed at appointments and would encourage each other in the roles we assumed like armor: we were approaching this fight as a team. Given the dire statistics and overall unknowns we made common happenings into events, and celebrated every birthday, holiday and milestone with full hearts.

How is your Mom today?

My Mom is alive and well today! I think she’s phenomenal in that she lives her life happily, healthfully, and without stress (seriously!). She’s over 5 years out from her initial pylorus-preserving Whipple and pancreatic cancer diagnosis (2014), and over 1.5 years strong from her completion pancreatectomy-splenectomy surgery (TP) and local recurrence of IPMN with carcinoma in situ (2017). She is independent with her continuous glucose monitor and insulin pump. She gardens with my Dad, even in the blistering North Carolina summer heat, sews all kinds of beautiful treasures and enjoys life!

My Mom is incredible, as is her story, and there’s no question about that. For me my Mom is the embodiment of bravery, eternal joy and hope; even when faced with this unspeakable and inhumane disease, she grinned and bore it, persevered and fought for her life. And her family: her husband, my brothers, her sisters, my husband – all of our family’s relatives and friends, neighbors and coworkers, as well as the outstanding professionals at Wake Forest Baptist played a part in this caregiving story. Our success is absolutely due to the love and support from so many.

How did you meet Dakotah? As this was your second introduction to pancreas disease, was this something that he had prior to meeting you or after? What was your initial reaction when you realized he had the same precancerous neoplasm as your Mom? 

I met my husband, Dakotah, at a local community college when taking a continuing education course for certification as an Emergency Medical Technician (EMT): We both had primary employment in unrelated fields but were looking to expand our respective skillsets. After a few years of friendship, we married and were working toward building our ideal life together. Neither of us was aware of Dakotah’s disease; but in retrospect there were signs and symptoms largely underestimated or ignored by the both of us. That is…until I thought Dakotah was having an episode of acute pancreatitis. At 3am on New Year’s Eve in 2018 I took him to the emergency room – his lipase was more than 180x the upper limit of normal. Dakotah was admitted for acute idiopathic pancreatitis. Over the course of his hospitalization, the Internal Medicine physician became alarmed and interested in discovering the cause given his young age. By discharge Dakotah was scheduled as an outpatient to be evaluated by Gastroenterology the following month with the same Endoscopist, in fact, as the one who’d been instrumental in my Mom’s diagnosis a few years prior. But by the time the MRCP resulted in March, I without a doubt knew this was most likely IPMN. And by that point, I had had several discussions with Dakotah to try to prepare him for what would likely be a future Whipple procedure.

Nothing prepares a caregiver for this. Absolutely nothing in this world could have emotionally prepared me for both my Mom and my husband having the same disease. I steadied myself as I’d done before but felt shocked by it all. That feeling lasted for weeks along with periods of denial, anger and sadness. I told family and friends, but didn’t elaborate. I didn’t talk about it on social media. Containment. Survival mode. The gamut of emotions cycled through me, but I had never expected nor even truly entertained the possibility of cancer.

Dakotah was scheduled for an EUS-FNA the day before his 31^st birthday. He spent days afterward battling another episode of pancreatitis that he wouldn’t seek treatment for. A continued diet of Jello, low-fat soup, and liters of water per day, boiled eggs, tuna and popsicles for at home symptom control. Continued weight loss. Through it all he continued working fulltime and completed his first semester of nursing school. Within a couple weeks Dakotah’s biopsy resulted, mucin, and he was rapidly referred to Surgical Oncology. Our first consult was with the same HPB surgeon as my Mom’s prior Whipple and TP. That day was special, too, because my Mom was having her 5 year surveillance appointment just on the other side of the exam room wall (in the same clinic, with the same surgeon), and I couldn’t accompany her and Dad. It was the first appointment I’d missed in five years, and it was so I could be with my husband to talk about the same tumor and surgery my Mom had had…oh the irony! I remember it all feeling so strange but that somehow, in many ways, we were so unbelievably blessed to be right where we were. During that appointment Dakotah was consented for a pylorus-preserving Whipple (scheduled May 2019), while my Mom was receiving a clean bill of health.

What are some of issues/struggles he’s had with this diagnosis? How is he now?

I would say Dakotah has struggled with diet the most, especially initially. It seemed to be an overnight change where he was having abdominal pain, bloating, acid reflux/gas no matter what he ate, paired with irritability and frustration due to weight loss, loss of muscle mass, and feeling terrible on a daily basis over a period of months. It wears on a person, their relationships and quality of life – it’s exhausting. Today he can’t yet eat whatever he wants, whenever he wants, but he’s done a great job adjusting and being sensitive to his body. He’s been on pancreatic enzyme replacement therapy (PERT) with meals for a few months which have helped him eat more food, and a larger variety of foods, than before. This also reduces abdominal discomfort for him.

Dakotah had to take temporary medical leave from nursing school. Luckily his spot was saved so he doesn’t have to reapply. But unfortunately he had to miss his required summer session of clinical rotations in order to recover from surgery, and that made him ineligible for the upcoming Fall semester 2019. He will be able to return to nursing school Spring of 2020.

Since surgery I feel like I have my husband and best friend back! Dakotah is happy and active six weeks out from major surgery – which is amazing! He’s able to be independent and do more for himself with each new day. I’m so proud of his progress: he’s a true warrior and a complete badass!

As Dakotah’s caregiver, what does a typical day look like for you right now? 

When Dakotah was first discharged we felt it would be best for him to initially recover at my parent’s home. In that way I could continue working fulltime and feel comfortable in knowing he would have experienced caregivers who could help 24/7. My parents were so thoughtful and kind to help us, and we will forever be thankful for their love and support; we truly contribute his uneventful recovery in large part to them. So during his recovery I would go over in the morning to wake him up and fix breakfast. And after work, and the gym, I would go visit again to fix a late dinner, give medicine and prophylactic blood thinner injections; and just hang out. It was reminiscent of dating – at least that’s how we romanticized it. Ten days after his discharge we celebrated our three year wedding anniversary by venturing out and having anniversary photographs made, as is our yearly custom. It was incredibly special to have those moments documented, and more-so that he felt well enough. A few days afterward he had his first postoperative appointment and was given the stamp of approval to return to the apartment we share with our four cats. LOL

Right now we’re still adjusting; but for us life has been returning to normal and our quality of life is continually improving! Dakotah returns to work this week. Meanwhile since I have continued to work, Dakotah has always encouraged me to not miss gym time. This has absolutely helped abate any lasting feelings of anxiety or depression, and it improves my sleep – all things necessary for self-care to avoid caregiver burnout.

What advice do you have for caretakers of pancreas disease?

I truly believe knowledge is power so do your research. Know the signs and symptoms of pancreatic diseases and be prepared for any related complications. Just be present and involved! The best source of information is your primary care team (e.g. pancreatic specialists at high volume centers). If you ever have concerns or questions, please speak with your physicians! They have an unparalleled wealth of information, and the good ones are compassionate, vested, and so will take the time to help you. Many Comprehensive Cancer Centers offer second opinions – seek one; you will not hurt your doctor’s feelings for confirming their take on an admittedly challenging, confusing and complex disease. And as always my advice is to advocate for yourself or your loved ones as it could save a life. I have loads more sage advice, but I’ll conclude with my personal motto of: Have courage. Be brave. Live life.

You and Dakotah started your own non-profit. Tell us how that idea started, future plans, etc.

My husband and I officially established our local charity, paNCfoundation (North Carolina Pancreas Foundation), last summer. All donations benefit pancreatic patients through the Cancer Patient Support Program at Wake Forest Baptist in Winston-Salem, N.C. However the idea originated almost five years ago due to our experiences with my Mom. We wanted to give back to the hospital that has forever changed our lives, and also help lower the hurdle between pancreatic patients and finding available local resources.

As an organization we’re small and homegrown, with only two full-time volunteers. With our first year just now under our belts, we have hopes to expand one day to positively impact the lives of all pancreatic patients in the state of North Carolina. We will be releasing our first Impact Report soon, and we’re proud to say we’ve just launched our very first personalized pancreatectomy care packages! More information about our activities is located on our website: www.pancfoundation.org or you can follow us on social media @paNCfoundation!

How have you been able to be part of the NPF?

I learned of the National Pancreas Foundation (NPF) as I had wanted to connect with other pancreatic patients and their caregivers, but was at a loss. Prior to my husband’s diagnosis we had strided for years in honor of my Mom’s journey, but the events weren’t within our own community so we didn’t feel connected. I actually felt even more isolated in my experience in that there was no local band of brothers I could commune with. However I found common threads, and friendships, through the NPF as the Support Group Chair for the North Carolina Chapter. I’ve been hosting a traditional, in-person, support group for those with pancreatic disease since September 2018, and I’ve met so many families whose experiences resonated with me and whose stories have become part of my memory. Pancreatic disease has been determined to impact my life, and it has, but in return I want to affect change so that no one has to face it unshielded, alone or without hope.

The NPF is a charity partner for the Marine Corp Marathon which is incredible! The Marine Corp Marathon is a huge event so it provides a platform to raise community awareness of pancreatic diseases as well as garner the necessary funding for pancreatic research grants, educational materials and support programs. This will be my first marathon, and I couldn’t have chosen a more meaningful cause.

*** HELPFUL LINKS***

To read more about pancreatic cancer, the signs and symptoms, please CLICK HERE.

Learn more about pancreatic cancer through the National Pancreas Foundation’s Animated Pancreas Patient, CLICK HERE.